When I facilitated Powys Patients’ Council several years ago now, which goes into Bronllys Hospital Mental Health Inpatient Unit, I was privileged to work with three volunteers. Kelvin was one of the liveliest volunteers who dedicated his time to speaking with patients and rallying them around to come in and visit us to talk about how they were doing and/or speaking up about any issues, compliments, concerns they had whilst being an inpatient on the mental health ward.

It is no secret that Kelvin used to be a patient, both at Bronllys for some time but also at “Mid Wales Hospital”. He was known, far and wide, by staff and other people in contact with services, volunteers and members of the public. Everyone seemed to know Kelvin. I don’t think he ever met a stranger. If he didn’t know you, he’d know all about you within minutes, and you’d know about him! He would have treated you to a story or two, shared some history, told a joke (quite often “politically incorrect”) and laugh hilariously so you had no choice but to laugh with him. He was incredibly generous and very funny, sometimes without meaning to be.

Kelvin at a PMHA trustee meeting in 2010 with fellow trustee Jill Dibling

I remember fondly some of the PMHA Trustee meetings, when trying to have a serious conversation about some order of business, Kelvin would break out the crisps from his rucksack (which he was never without) and start to share them out, not caring a whit about whether it was the right time for a break. Kelvin could get quite passionate about rights and would tell you straight if he thought something wasn’t right. He wasn’t shy about saying what needed to happen - he expected people to step up to the plate and do what was necessary.

Kelvin's Poems & Jokes page in the PMHA newsletter

He was a nostalgic and used to quite often tell stories of his time in Mid Wales Hospital and the fun and community they had. He spoke about his catering experience and I know from attending his funeral, and hearing some more about his life, that he was a very good cook. I believe he used to volunteer/cook with Mid Powys Mind on occasion.

Before going into Bronllys Hospital for our meetings with patients, we’d always have lunch, the volunteers and I, and have a bit of a briefing about issues we’d picked up from the last meeting and actions that had taken place. Kelvin was known to the staff at “The Honey Café” where he would chat away to them as if they were his friends. He would order the same thing always, a cheese sandwich, a cup of coffee and an apple or berry tart with vanilla ice cream, all to come at the same time. He is the only person I knew who could stand whilst having a cup of coffee in one hand, a cigarette in another and fall asleep - an incredible feat of balance.

Despite Kelvin’s physical ailments, he would always be ready to come to Patients’ Council and looked forward to his outings. He was always telling me about ways of saving the public purse and would speak quite often about the amount of money being spent on services and whether it was really value for money. He made me reflect on how things were and are now.

I think Kelvin always sought for ways to belong, to local community. He was incredibly attached to Llandrindod Wells Football Club and used to go to games with his Dad. He was dedicated to helping the club in many ways. He was also a bit of a rock and roller, liked wearing leather jackets, jeans and loved Elvis Presley and was seriously attached to watching Westerns.

Gravel Baptist Chapel

People I’ve spoken to remember Kelvin very fondly. One of the Senior Managers at Bronllys mentioned a Christmas on the ward she’d never forget, especially given what Kelvin had bought for all the nurses!

We will miss Kelvin. We will miss his laughter, his humour, his stories and his abilities to break down the barriers of what is expected and the unusual. He took risks without knowing he showed us how to push the boundaries. He didn’t do what was usual and yet he was so very familiar. He wasn’t silent and sometimes his stories meant you got lost or side tracked. I learned to be patient with him as he sometimes wouldn’t take no for an answer. He demanded respect and well, he deserved it. His life, whilst too short, packed a punch, I’ll never forget him.

There is a saying at the end of the novel, “Middlemarch” which I feel appropriate to end with (and have taken some liberties of changing some words).... "His full nature spent itself in deeds which left no great name on the Earth, but the effect of his being on those around him was uncapturable. For the growing good of the World is partly dependant on unhistoric acts, and on all those people who live faithfully their hidden lives and rest in unvisited tombs.”

Powys Teaching Health Board (PTHB), along with a number of health care agencies, particularly hospice care agencies, which includes Third Sector, (ie: The Bracken Trust), held various events during the week. The aim was to encourage people to speak openly about death and dying, discuss what advance planning is, and also how to cope with dying, death and bereavement.

Several weeks ago now, PAVO’s Health and Social Care Team held a joint “engagement” session, with PTHB colleagues, the Third Sector and other agencies, exploring cancer and end of life or palliative care. We discussed a number of topics but one of the key themes which emerged was in relation to “Advance Care Planning” which includes “Statement of Wishes and Preferences”, “Advance Decisions” and “Lasting Power of Attorney”. However, the above care planning implies that someone is in health care and/or on a patient pathway of some sort.

I’m not sure about anyone else, but I don’t usually think about my death or the death of people I care about. It seems to me a topic shrouded in fear, perhaps just thinking about it may propel it to happen sooner than I’m ready? I wonder if there is a type of stigma, perhaps unspoken, associated with death? Mostly I reckon it’s about how someone dies. Generally when we hear of someone’s death, we almost always ask, how? Do we then go on to judge what is a good death or a bad death? In what way might this influence our thinking (or not) about our own death experience?

I’ve been reflecting on how we can be affected by someone’s death by suicide, how this can have a lasting effect on us, or if someone dies from alcohol consumption, or cancer brought on by smoking, or dying of a drug overdose. What does this leave us with? Does it leave us with an unexpressed fear in relation to ourselves?

In my family, and whilst living in Powys, I have experienced my fair share of bereavement; my Mum dying when I was turning 12, two of my first cousins who have both died from suicide in recent years in really difficult circumstances, two of my closest uncles who both died from complications due to alcohol dependency, a beloved neighbour who died due to complications of pneumonia. All of them died in ways that could be seen as having had a “bad” dying experience. There is a saying that it is not death we fear, but dying. So, is it the process of dying that matters most to us?

By contrast, I have experienced the death of a very beloved aunt, a surrogate mother. She lived to a good age of 86. She had been in and out of hospital for some time and we all knew she was getting frailer, but when she died at home, on December 18th 2015, we were shocked, but grateful for the “how”. She died in her own bed, waiting for a cup of tea that her husband, diagnosed with Alzheimers and 92, was making for her.

In Ireland, we have a tradition of “waking” our dead and I find this tradition comforting, normalising and healing. For my aunt, we sat around with her, in her open coffin, in the house for a few days before her burial. Friends, neighbours and relatives came to see her, we spoke of her and told stories. We patted her head as we walked past, held her hand, and waved incense around her. We talked with her as if she was listening to us. We ate with her nearby, certainly drank to her (she loved a glass of whiskey), my uncle, her children and grandchildren slept in the living room with her, she was not left alone. For my uncle, this was particularly comforting and allowed us all to grieve, talk about and celebrate her together. It was normalising.

What made the process of her death go so smoothly was our advanced planning, although clearly we didn’t plan when she was to die! Several years ago, we planned a writing their “Will” weekend together where all the family spent time, with much food and drink, planning what they wanted, when they died. Did they wish to die at home, what about resuscitation, where did they want to be buried, music, poems, readings, who did what, even who was to get which of their belongings. They dictated what should happen and we wrote it down. Everyone had a say and “their” say was final. As a result of this pre-planning, which was good fun with much laughter, the process of my aunt’s death was smooth and without drama, well apart from a kerfuffle at the church door when as daughters in the family, we carried her coffin into the church and there was a lively discussion about who was shortest and therefore needed to be in front!

Having thought about “Dying Matters”, I have made a commitment to myself to not only write my will, but also to think about my “Advance Planning”, what this would mean for me and how to communicate this with my loved ones. The aim here is to do this early so I don’t have to worry about it in the future and at just 50+, I don’t yet consider myself to be in my old age, despite some system conditions or national definitions!

I’ve been reflecting on how we spend a great deal of time in “birth” planning, we have our birth plans, we have our mid wives sorted out, we choose how and where we will give birth, we check out the birthing centre and we may choose this over a home birth. Midwifery services give us a choice of having a home birth. We avoid having babies in hospital unless it’s absolutely necessary. How often do we avoid dying in hospital? This too surely is a choice? How are health and social services looking at this, how are people informed about their choice and opportunity to jointly plan for this? It is positive that health and social services are planning for this. The Palliative Care Project Board in Powys, chaired by Alan Lawrie, Director for Primary and Community Care within the PTHB, is helping bring this agenda together. Within some local hospitals, there is a plan to create “palliative care suites”, which will offer people more choice.

Birth and death fuel the cycle of life. I find it interesting that we spend a great deal of time anticipating, looking forward to, planning, speaking about, anticipating with joy a birth, but we avoid so often this process in relation to death. Could this be looked at with anticipation, after all it’s the one thing we cannot avoid, it’s going to happen whether we like it or not? Who do I want with me, holding my hand? Where do I want to die? I can’t predict how, but neither can we in a birthing experience, we can only plan and aim for the best experience, exactly as we would wish. What would our “gas and air” be in relation to dying?

In a recent Befriending Network meeting we spoke about the concept of doulas (or midwifery for dying) and having people, perhaps people trained as dying partners or supporters, sitting with people who are dying, supporting family members. Having sat with a great uncle, who was moving in and out of life having turned 92 in recent years, it was an amazing experience to sit and hold his hand for some hours, just being totally present with him.

Everything whittled down to being acutely aware of the senses, of the here and now. What could he see when he sat up suddenly and fixed his gaze at something I couldn’t, what did he mean when he clutched my hand, was he cold or too hot, did my singing soothe him, did he hear me when I spoke with him about how grateful I was for him in my life?

The meaning of “palliative” is to relieve suffering and we tend to equate this with end of life. But surely “palliative care” means offering this at any time in life, not just when we are dying? Alan Lawrie recently said that “health and care services only have one chance to get it right at the end of life”. He goes on to say we need to encourage people to speak more openly and plan for end of life care.

As I was thinking about dying, by coincidence (and in my opinion, there is no such thing), I came across a TED talk by BJ Miller which has profoundly moved me on death and end of life care. It is well worth the 20 minutes to reflect on this man’s heart stirring message.

Dying matters, it brings us closer to a full life experience and to living now. So, how are you planning one of the most important things you’ll ever experience in life, your dying experience? What really matters to you, in life, and equally of importance, in death?

I can’t finish this without quoting Neil Gaiman andTerry Pratchett, heroes of mine, from their book Good Omens. “Don’t think of it as dying, said Death. Just think of it as leaving early to avoid the rush”. Now that truly is anticipation!

Tuesday, 6 June 2017

After 4 years working in PAVO’s Powys Befrienders’ team, Jill Ball recently started a new role at Age Cymru Powys as an Independent Advocate. Age Cymru Powys is the largest voluntary sector organisation providing support to people over 60 in Powys, Mid Wales, covering the old shire counties of Montgomeryshire, Radnorshire and Brecknockshire.

The organisation works to sustain and improve the quality of life of vulnerable older people in Powys. It believes that older people should be respected and valued as individuals in terms of their dignity, status, personal autonomy, diversity of needs, aspirations and expectations.

I caught up with Jill at her base in Newtown to find out more.

Tell us about your new role with Age Cymru Powys

My role as an advocate is to take action to help people say what they want to say, secure their rights, represent their interests and obtain the services they need. I meet with people daily and listen to the issues that are of concern to them, provide them with information, and discuss with them the options that are available to them. If required I assist them with contacting third parties and written correspondence. As an independent advocate my role is impartial and non-directive.

What is joyful about the role is that in supporting others to access the services they may need, or by them resolving an issue that has been of great concern to them, they then can continue to enjoy happy and fulfilling lives.

Which areas of Powys do you cover?

My base is at the Age Cymru Powys Centre, Parkers Lane in Newtown. The area I cover is the North of Powys and my colleague Louise Hicks covers the South of the county. I have an advocacy drop-in session every Tuesday 9 - 12.30 at our Newtown Centre. If required I visit clients at home or in a care home, wherever they reside.

How is the new job going so far?

I am enjoying it tremendously; the work is varied and interesting, people consult the advocacy service for many different reasons. They may wish to investigate what other accommodation is available to them now that their own needs have changed, which may be due to bereavement or an escalation of care needs. A client may be unhappy about the care they are in receipt of, and need assistance with knowing who to contact and may need assistance with getting their voice heard. I support clients when there may be conflict in their family, to reinforce their wishes.Who can be referred to the Age Cymru Powys service and how?

The service is free, independent and confidential and is for people over the age of 60 living in Powys. People can self refer into the service or can be referred into the service by a third party, with their consent.

If people have been living alone and isolated for a long time what kind of support might they need?

Someone who can listen to what their needs are, and then to provide them with up to date and accurate information on what is available to them. They are then able to make informed choices whether that be in relation to their health, care, finances or social needs. If they need support to access a service, whatever that may be, Age Cymru Powys is able to guide them through this process.

How can the kind of support Age Cymru Powys offers impact on people’s physical and emotional wellbeing?

People are less anxious and more confident because they have the support and knowledge to face whatever problem they may be experiencing. The service is accessible. People say they enjoy the face to face contact and build up a good rapport with staff members.

Age Cymru Powys also offers a toenail cutting service throughout the county which is a much needed and well supported service.

If people don’t receive the support they need, what can happen to them?

People can become socially isolated which can impact on their physical and mental health. Worst case scenarios could be that people become impoverished as they may not access the financial assistance that is available to them, which could affect their tenancy. They may become neglected as their personal care needs are not being met.

Which other organisations do you work closely with, either locally in Powys, or in the rest of the UK, to provide support to people?

One in which all people feel valued. Communities provide services dictated by those who reside there. Where there are no barriers to services. Where everyone has someone to have a chat with and spend time with and where all individuals are celebrated and cherished.

What are the main challenges of the role?

Very long waiting times on the telephone to get through to some services. The distances one has to travel; less travelling time would enable me to see more people.Tell us about some of the most rewarding work you have done at Age Cymru Powys so far

I have enabled a very elderly lady to stay in the care home of her choice. Supported a lady with hearing loss to solve her internet problems, so that she can email her family in South Africa and keep in touch with her grandchildren. Helped someone to understand all the care and accommodation options available to them, as they were given notice on their rented property. They are now living independently within a complex that has someone on the premises 24 hours a day and should they require a greater level of support in time this will be available to them. When you are not working for Age Cymru Powys, how do you enjoy spending your time?

I enjoy spending my time in my garden and greenhouse and with my two little grand-daughters, and whenever possible I love a trip to the seaside, particularly our beautiful Welsh coast.

Many thanks to Jill for updating us about her new role. If you want to find out more about the Age Cymru Powys service you can contact Jill by emailing: jill.ball@agecymru.org.uk or ring 01686 623707.